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Author Topic: you'll just have to deal with it, I think not!  (Read 5407 times)
sullidog
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« on: June 14, 2011, 07:57:57 PM »

I have renagel as my binder, when I take more then 3 I'm perscribed to take 5 I might as well be taking a bowel cleanser. How do I know it's the binders? I've experimented myself. When I just take 3 my stolls are fine but if I take more might as well be taking a bowel cleanser. Last year I bought this argument to my dialysis team and they told me I'd just have to deal with it and that people take more then I do and don't complain, ok but those people probably don't sit on the toilet every 5 minutes, either I'm doing that or constipated. I'm going to talk to my dialysis staff again tomorrow about it so maybe since we've had new staff since then maybe they'll understand? I sure hope so because I know this bad of diereah can't be good for me. I also know there's other binders out there that probably don't have this affect.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
Cordelia
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« Reply #1 on: June 14, 2011, 08:19:32 PM »

I get constipated taking just two of those renagel, I guess it's because they get absorbed into the GI tract. Those HORSE tablets are so not fun.    ::)   I eat a lot of fruit at night, that helps me, I eat blueberries and raspberries the very last thing of the day, to guarantee regularity the next morning   :thumbup;
« Last Edit: June 14, 2011, 08:26:58 PM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
kamar55
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« Reply #2 on: June 15, 2011, 06:45:22 AM »

I take 5-6 Phoslos a day and never have a bowel issue....Have you tried them?
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brandi1leigh
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« Reply #3 on: June 15, 2011, 08:22:36 AM »

I take 6 a meal and had that same problem when I first started taking them, but lucky for me, the problem seemed to clear itself up after I'd been on them awhile. But it was horrible until then (I also did the self experimentation thing to make sure it was the renagel).

Good Luck! I hope the new staff gives you some options!
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billybags
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« Reply #4 on: June 15, 2011, 11:26:38 AM »

Thats awful my husband has been on them for about 18 months with no problems except he now finds them hard to get down.
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kamar55
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« Reply #5 on: June 15, 2011, 03:33:35 PM »

Thats awful my husband has been on them for about 18 months with no problems except he now finds them hard to get down.

My biggest complaint about taking so many pills, esp. big ones is that I use up so much of my fluid allowance to get them to go down....
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sullidog
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« Reply #6 on: June 15, 2011, 06:39:27 PM »

So I asked them today and they said until the nurse practitioner gets back (she's on vacation) that I would have to take amodium with it, but my farmicy says that taking my binders at the same time  with other pills will make the binders less affective, so I asked my nurse to call the neph and she was like well he's hard to get a hold of well I've called him in the past myself and he always calls me back, you just don't wanna do your job so tomorrow I will call the neph myself and handle this my own darned self if they don't want to.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
Stoday
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« Reply #7 on: June 15, 2011, 08:21:03 PM »

If I get a runny stool, I take a 30mg tablet of codeine phosphate. That fixes me up for the next 30 hours or so.

I'm supposed to take 3 Renagel per meal, but I tend to snack and only eat one meal a day. So I take one Renagel if I have a heavy snack, none if light.
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Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
Started hemo July 2010
Heart Attacks June 2005; October 2010; July 2011
Ang
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« Reply #8 on: June 15, 2011, 08:38:53 PM »

forget the dialysis staff,discuss it with your neph,he's the only who can adjust
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cath-hater
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« Reply #9 on: June 15, 2011, 08:47:53 PM »

i would try to find a different binder. there are other options out there. i know what it's like to have to go to the bathroom every 10 minutes. not fun at all. i use fosrenol. they are chewable and don't give me constipation or diarrhea. good luck.
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Currently on PD using Fresenius.
PD for 9 years.
1 failed transplant in 2010 due to FSGS - donor kidney still inside and still producing urine (weird), but spilling alot of protein.
Off all immunosuppressants.
Currently not active on any list (by choice).
Rerun
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« Reply #10 on: June 15, 2011, 09:05:40 PM »

Ask about Renvela.  They are the "new and improved" Renagel.  They are supposed to dissolve in your stomach faster and they even can come in a powder that you mix up and drink before eating your meal.  Not as convenient as the pill (it comes in pill too) and you use up a cup of your fluid getting the powder down.  Renagel plugged me up and then after about 3 days I would shit a brick.  Sorry, bad visual!

 :waving;
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Stoday
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« Reply #11 on: June 15, 2011, 09:17:09 PM »

Ask about Renvela.  They are the "new and improved" Renagel.  They are supposed to dissolve in your stomach faster and they even can come in a powder that you mix up and drink before eating your meal.  Not as convenient as the pill (it comes in pill too) and you use up a cup of your fluid getting the powder down.  Renagel plugged me up and then after about 3 days I would shit a brick.  Sorry, bad visual!
I had a week in hospital ending with my starting dialysis. I'd got blocked up several days before ending up in the hospital. After a week's gestation, I finally gave birth at 2 a.m.. That turd was a beaut, and refused to die. I went to the nurses' station. "Someone has to draw the short straw", I said. The trainee got lumbered. I said sorry and went back to bed to recover from my confinement.
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Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
Started hemo July 2010
Heart Attacks June 2005; October 2010; July 2011
Bruno
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« Reply #12 on: June 16, 2011, 05:15:50 AM »

I'm on Rennagel and definitely it has made me constipated. I've tried everything...prunes for breakfast with all-bran...fruit...my daughter has suggested a good hot curry...someone else that I'm dehydrated...but I know it's the Rennagel.
I used to enjoy going to the loo, I could take a newspaper or a good book and look forward to up to 15 minutes of quite enjoyment followed by a feeling of quiet accomplishment for a job well done. Now all that is denied me, I now approach with trepidation...no longer with reading material in hand, my confidence shattered, doubt filling my mind...will this be the day for my download?
Surely after 3 days sunshine will again break out in my loo.
I'm desperate.
Any suggestions welcome.
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billybags
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« Reply #13 on: June 16, 2011, 06:47:51 AM »

Stoday, Bruno, thanks for that, I can not stop smiling,
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sullidog
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« Reply #14 on: June 16, 2011, 06:26:03 PM »

Well I did talk to my neph today and he is switching me to renvella, rr renagel also does that to me too. Not fun at all.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
kamar55
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« Reply #15 on: June 17, 2011, 05:38:57 AM »

pain meds, but not my binder, always constipate me. dr. prescribed Miralax and it works fast...big relief
« Last Edit: June 17, 2011, 05:41:10 AM by kamar55 » Logged

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Rerun
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« Reply #16 on: June 17, 2011, 06:42:39 PM »

Yes, Miralax help loads... no pun intended.    :rofl;

Also, if you can get to a Natural section in a store "Smooth Move" Tea helps loads too.    :rofl;
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sullidog
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« Reply #17 on: June 17, 2011, 07:08:27 PM »

I'll have to try that, I'll have to get it over the counter though as my employers insurance doesn't cover perscriptions that also have an over the counter version, they quit doing that for some reason, and I don't have medicare part d.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
Bruno
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« Reply #18 on: June 22, 2011, 11:23:34 PM »

Interested parties may be happy to know that the hot curry has had some effect and, although I'm not back to my newspaper routine yet, a little ray of sunshine has entered my life.
My next question to all the Rennagel fans out there is "How long can I combine Rennagel and dialysis and get successful outcomes?"
Pardon that pun, it just slipped out.
(oops, sorry, another one)
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natnnnat
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« Reply #19 on: June 22, 2011, 11:50:36 PM »

Get CMV Bruno.  That'll sort you out.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MooseMom
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« Reply #20 on: June 23, 2011, 12:19:15 AM »

Why are the poo threads always the most entertaining?

I don't take binders yet so have no answers, but my mother had to take them while she was on D.  She tried them all, and they all gave her some sort of gastric distress.  She would take one kind of binder and it would work for a while, and then she would begin having some sort of poo problem.  So she'd switch to another, and again, all would be well until those triggered a different kind of poo problem, and on it went.  I'm not sure she ever found the perfect binder.  But she was relatively old and frail, and that didn't help.

I remember how much she would complain about having to spend so much money on these great stonking pills, only to have to switch brands, incurring more expense and a bigger pile of unused bottles of binders.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Bruno
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« Reply #21 on: June 23, 2011, 12:52:04 AM »

Nat, you've got me...what's a CMV? A superior curry? Don't worry MM you'll take the same interest in them (binders) when your one of the dual outlet systems we are all equiped with shuts down and you are totally reliant one and it blocks up.
You then become what you might call 'hard up'.
Sorry, I've managed another pun.
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MooseMom
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« Reply #22 on: June 23, 2011, 01:05:19 AM »

I believe nat's Gregory is suffering the effects of the cytomegalovirus, complete with the squirties.

Yep, I know that binders are in my future.  I have recently discovered that red curry absolutely cleans me out, so that will be my remedy should one becomes necessary.  Naturally, I love a good Thai red curry, but they sure don't like me.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kitkatz
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« Reply #23 on: June 23, 2011, 02:34:51 PM »

Tums as my binders, are the only ones that do not give me diarrhea when I take them.
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sullidog
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« Reply #24 on: June 23, 2011, 05:18:05 PM »

My calcium always runs on the hi side of normal so any pill with calcium has been taken away from me.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
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